Saturday, March 31, 2007

another apparent failure

I wrote this four years ago, and since I am recording stories with different endings I thought this would be another scenario that deserves to be dusted off and posted here.

_____

Camille called me tonight, somewhat frantic, with an obvious need to tell me some news about her daughter.

Camille is an overprotective mom and grandmother who has been disapproving of her daughter's choices. However, as she is ultimately interested in her daughter's well being (and the associated well-being of her grandchild) she mostly keeps her mouth shut for fear of alienating her daughter.

About two months ago Camille had to be hospitalized for gall bladder surgery, and that left all the caregiving responsibilities of the new grandchild to Karen, her daughter, as it should be. Because it had been my job to go to their home and help educate the family on caregiving for this disabled child, I was trying to split my time between Camille and Karen. As I said though, since the surgery I have been spending all of my visiting efforts directed toward Karen.

From my perspective, Karen was giving all her best efforts toward being a mom. Unfortunately she is not married, although she does live with the child's father. Karen is young and a little immature perhaps and clearly in over her head, but I always got the idea that Karen has had this role in her family forever, so it is not an unfamiliar position for her to be in. She is not a black sheep, because her family does their best to support her, but she tends to make bad choices and as a result she never really seems to meet their expectations.

Over the last two months I decided that I was glad that Camille had the gall bladder surgery because it forced Karen into the role of primary caregiver, and that was necessary. Also, I got to spend more time with Karen and impart a little wisdom and a little perspective on dealing with the myriad of issues related to parenting a child who has a disability. I thought Karen appreciated me, and we talked turkey about a couple important issues. I thought we were on target.

Sometimes, I have a tendency to interpret eye contact as connection. I experienced eye contact with Karen several times over the last month, generally as I was relating some supportive statement and positively reinforcing her efforts.

Back to the story here... so Camille called, in obvious frantic mode, announcing loudly that she was a grandmother, yet again and that Karen had another baby.

My mind spun around the possibilities, and I was immediately thinking, "How strange.. how could she have had twins, and why did she only keep one, and where has the other one been???" It is the only way I could get my mind to process the information.

But as Camille spoke, it became more clear. Karen had been pregnant, 9 months in fact, and went into labor on Friday and subsequently delivered a very healthy and very large 8 pound baby girl. Of course the entire family was shocked. Is shocked. No one had any idea.

As Camille spoke, I thought of Karen, who is not a heavy woman. In fact, it never struck me that she was even overweight at all. I understand how a woman can theoretically hide such a thing, but I always wondered how everyone around could have been so clueless. I suppose she frequently wore sweatshirts. I never knew.

According to Camille, as Karen was rushed to the hospital and began delivering, she simply kept repeating, "I can't be pregnant, and I can't have this baby, it is already too hard just taking care of one!" Karen was distraught and crying, and her beautiful baby girl came into this world under her repeated protestations and outright denial of the reality that was playing out in front of her eyes.

Camille is still shocked, and she went on to give me the statistical details that accompany every birth. Apparently the baby is healthy, and Karen is doing "well."

The difficulty I am having is in the definition of "well." Despite my contact with Karen, and despite the time that I spend in serious conversation with her, and despite any connection I may have imagined, and despite the eye contact that validated the transmission of communication between us, I obviously totally missed the boat.

I can only imagine Karen's pain that would cause her to remain in denial for so many months. I can only imagine her fear that would make her cry as her new baby was being born. She had all this content under the surface, and it was totally impacting on her ability to care for her son, and I never even realized it.

I understand that her own family did not know, but that is not the point. Her family is not trained, and does not interpret eye contact as connection. Her family is not charged with the responsibility of educating Karen on how to care for a child who has a disability. To do this effectively, I needed to be inside Karen's head and I needed to understand her heart. I accomplished neither. And it doesn't matter that the other care providers didn't know either.

None of that matters because they are not me, and I expect more of myself.

I just expect a little more out of myself. And I have apparently failed.

When I see Karen next, I will pull her aside and apologize to her. She will not understand why, probably. Then I will tell her that her new daughter is beautiful, and I will pray for a little clearer vision from now on.

Thursday, March 29, 2007

Not every story has a successful ending

On most days people appreciate the things I do, which is a positive reinforcement for me to continue with those tasks that keep my private practice running. However, the reality is that sometimes people don't appreciate or understand what you are doing, even if you take the time to explain. Today seems to be the right day to talk about an experience I had when someone was not able to appreciate my efforts.

Collin’s mom is single or divorced – I am not sure which. She has two children by two different fellows, neither of whom believes that their presence is important in the lives of the children. The mom does not work outside of the home; her primary role is as a parent.

Their apartment is in a blue-collar town outside of a large metropolitan area. The town is famous for its chemical dumps and environmental toxins. I do not know if it means anything, but I cannot listen to AM radio in their neighborhood – there is just too much RF interference from the high-tension electricity lines. Some people think that these electric lines are dangerous. All the studies I read are inconclusive, but I sure do see many kids who have developmental disabilities in this area. Maybe it is the environment, or maybe it is the culture. Probably it is both.

Collin is a high-energy kid who likes to run and bounce. That is hard to do in their very modest apartment. I do not imagine that the mom can afford a larger apartment on her welfare check. I do not know if she gets child support. I doubt it, somehow.

Bad things seem to happen to Collin’s mom. She has too many medical issues for a person who is only twenty-three years old. She had some suspicious skin lesions removed, but maybe they were only skin tags. Today she told me that she may have lymphoma, or it may just be a swollen lymph node or two. She tends to hear the worst-case scenario, and then she hangs onto it.

Collin’s mother is always enmeshed in the tragedies of her family. Her sister was recently in a car accident, and that caused chaos for Collin's mom. The grandmother needed a place to stay for some reason, so she ended up in the already too-small apartment for a week or so.

Collin supposedly had a cardiac problem a couple months back and the mother did not return my calls for a month. Nothing seems to have come of that problem, but at the time, it was a big deal. Most therapists would have asked for re-assignment because of the family's high cancellation rate, but I do not generally do that. I figured that they were doing their best with the resources that they had available to them.

Over the course of the last half of a year, I worked with Collin. Now he is able to sit and attend to an age-appropriate activity for a reasonable amount of time. He is able to listen to and follow directions. He is able to tolerate different sensory characteristics of toys that he previously could not tolerate (like the way that they felt to him). His fine motor skills have improved dramatically. I taught the mom strategies for providing him with the deep tactile and proprioceptive sensation that his little body craves, so now he gets hugs instead of crashing into people and furniture. I also taught the mom how to use cognitive and behavioral strategies to help him learn self-regulation of his attention and behavior.

Collin is a child who enjoys routine, structure, and predictability, probably a factor of his limited experience outside of the small apartment that he lives in. Conversely, his tendency to ‘melt down’ in new situations causes the mom to avoid new places, so the problem is self-perpetuating. A few months back I tried to have Collin come to my clinic, which is a bright, open, and busy environment that would have challenged his ability to maintain behavioral control and self-regulation. It would have been a good environment for him to practice these skills in, but the mom’s car would break down, or someone else would be having a catastrophe that needed her attention, so they constantly cancelled his appointments. Then the mom simply requested home visits again, which were more convenient for her.

I taught the mom safe ways to challenge Collin’s limits. We reviewed how to provide positive reinforcement of his behavioral self-control. I also taught her how to use predictability and routine therapeutically when he really needed it. In preparation for his transition out of the early intervention program and into the preschool system, I provided her with self-advocacy materials.

Collin’s needs are ongoing; they will not remediate quickly. Despite Collin’s progress, there is still work to do.

Today, at the end of our session, Collin’s mom asked me if we could review his intervention plan. She told me that she is unsure what the goals are and if we have been doing anything for Collin.
I stared at her blankly, agreeing to review anything she wanted.

Her words stung, even though I should not let them.

Tuesday, March 13, 2007

Best treatment options for autism

In a recent comment a reader asked my opinion about the best treatment options for autism. This is inherently a loaded topic because there are so many people who have aligned themselves with particular treatment approaches. Also, there are some people who have experienced significant improvement with a single approach.

I form my opinion on this question based on twenty years of clinical experience working with children and families. I don't believe that there is a single approach that works for everyone. Also, just because something works for someone at some point in time has not been an indicator that it will work for everyone else at countless other moments in time.

From an evidence-based perspective it seems that behavioral approaches have the best research to support their efficacy. However, behavioral approaches are not unitary and the concept of 'efficacy' needs to be clearly defined. Certainly, there is no overwhelming evidence that any behavioral approaches will cure autism.

Lack of evidence in other approaches is often a reflection of the approaches themselves. Behavioral interventions, with their reductionistic focus, lend themselves to measurement. It is more complex to measure 'relationships' or 'communication.' This causes some people to mistakenly believe that only behavioral approaches can be helpful - and that most certainly is not true at all.

All this being said, I believe that there are certain components that are critical in any 'best' intervention program:

1. A child who has an autistic spectrum disorder needs a family that can provide love, nurturance, and support.

2. Structure and consistency are important for all children, but this seems to be a particular need of children who have autism.

3. Given their preferences for structure and consistency, children who have autism often learn skills best with simple behavioral approaches.

4. Sensory differences need to be respected and accomodated for. Sometimes this means modifying the environment to reduce noises, or decreasing visual distractions, or allowing normative opportunities for movement or other sensory experiences that the child is driven toward.

5. Children who have autism need to have access to typical peers and need social modeling from the children and adults that they interact with.

6. Children who have autism have the right to experience typical childhood, including normal play and socialization experiences. Not everything should be part of a program.

7. Parents and caregivers need education, coaching, and support. They also need access to respite services.

For different people and for different families these basic program components may vary over time. Sometimes the most important intervention is family education on the IEP process, and sometimes the most important intervention is environmental modification, and sometimes the most important intervention includes a behavioral plan.

A lot of families ask me about gluten or casein free diets, hyperbaric oxygen, megavitamins, chelation, and swimming with dolphins - among other interventions. I have a stock answer that I provide when people ask me about these things: If my child had autism I would be swimming with dolphins too. However, I think it is important for families to measure their resources (and resources are broad, meaning time, energy, money, family needs, etc.). If there are adequate resources to support a parent flying to some distant city to sit in a hyperbaric chamber with their child, and if there are no known negative side effects - then why not?

Any practitioner who understands and can promote the seven major components listed above into a program can provide the 'best intervention.' Above all else, autism has an impact on the entire family - and the family has to be a focal point during interventions. So, an effective practitioner can council with the family to make choices about interventions over time. An effective practitioner has to evaluate the child and understand the child's skills and needs - and just as importantly, has to interact with the family in a way that provides guidance and support.

I offer no references, because this is just my opinion.

Saturday, March 10, 2007

The perils of mediocrity and the pursuit of a Centennial Vision

By definition, mediocrity implies ordinary or unremarkable quality. For occupational therapy to achieve the centennial vision that is proposed by AOTA I believe that the profession needs to move far beyond mediocrity.

This week I experienced mediocrity in occupational therapy and in educational systems - it was concerning, so I wanted to share it here.

A parent asked me to attend a meeting at school in preparation for a CSE meeting. The parent was informed that occupational therapy services would be discontinued for her daughter. I won't even argue the child's needs here - but rather will point out the process by which this determination was made.

The child has an IEP but there are no statements on the IEP that indicate her present levels of performance as they relate to her occupational therapy needs or her academic functioning. There are also no goals on the IEP that relate to any needs that might be typically associated with occupational therapy as a related service. Still, the child was being seen for OT twice weekly because the service was listed on the IEP - I really don't know what they were doing all year because there are no progress notes. The therapist verbally states (there is no written discharge note or recommendation) that the child should be discharged. The OT recommended that the child should participate in home economics where she can get practice in functional measurement and fine motor skills instead of skilled occupational therapy.

I raised the point that in order to determine if someone was ready for discharge that there needed to be some statement of their level of functioning, and hopefully some record of progress related to goals that were established to improve functioning. The occupational therapist and the school team could provide neither. There is no written record of anything.

Instead I was told that this particular child had fewer needs than other children who are in special education and even those other children weren't receiving occupational therapy. Does this mean that we should lower our standards to the lowest level of care that is provided? Does it mean that if a district decides to only provide services to children who are profoundly delayed that the parents of children with severe delays should be told to stop 'forcing' districts to provide services?

Later in the week, in an unrelated case in the same district, a parent is trying to get their child out of regular education and into a self-contained classroom. The child has severe physical disabilities and does not fit into the regular education class. As the years go by it is more and more evident that the child can not meet the demands of the curriculum. In my opinion the child needs a 12:1:1 class - still academically oriented but moving at a slower pace. Also, I was hopeful that a self-contained class would be taught by a special educator and there would be a greater chance that the teacher would understand the nature of the child's disabilities - this way the needed physical accomodations would be more likely to occur. For example - after four years in the school there is still no written evacuation plan for this child. Although he can walk (slowly) he is not able to physically navigate stairs or busy hallways in an emergency. This is one small example of how the child needs educators who understand his physical disabilities.

The district wants to maintain the child in the regular education classroom, but reluctantly agreed to tour the parent through a 12:1:1 class. The parent asked me to accompany her on the tour: the class has six kindergarten and first grade students, one in a wheelchair, one with Down Syndrome, a couple with autism, and most non-verbal. The one outlying child in the class is in fifth grade - somehow the district got a 'variance' for this class so they can include this much older students with the non-verbal K and 1st graders. The district is 'willing' to place the student in the class, if that is what the parent wants.

The problem here is that there is such an amazing disconnect between what this child needs and the current program - and perhaps an even larger disconnect if the district thinks that the K-1 12:1:1 class full of profoundly disabled children would work for this third grader. What amazed me was that the teacher conducting the tour indicated that the district believed that the child should stay in regular education. When asked if they had a more appropriate 12:1:1 class they just shrug their shoulders - this will mean sending the child out of the district and it will require 'administrative approval.' Should we hold our breath?

Most parents are not keen on self contained or restrictive environments, but sometimes it is necessary. Other times parents want regular education but just want appropriate supports (including appropriate related services, properly written IEPs, and goals). What does it say about a district when it fails to meet the needs of children on so many different levels and in so many different ways??

Worse, I don't know how professionals work in these places. Is anyone who works there willing to stand up and question the way that the district operates? Why aren't there goals? Where is the district OT to advocate for the needs of this child - and why does the parent have to bring in an outside person?

This OT doesn't represent the entire profession and this district does not represent all of education, but these stories are in no way uncommon. I witness this kind of mediocrity - and sometimes even ineptitude - on a frequent basis. I understand that my private practice draws those families who are not satisfied with the regular process - but is the system really aware of how many families are overtly dissatisfied with special education in general and school-based occupational therapy in particular???

Can OT achieve its centennial vision when it fails to meet the basic needs of people in this way?

Tuesday, March 06, 2007

Occupational therapy and cones

If a cone fell on the floor, what is the chance that it would land ‘standing up' on its base??

I wonder this because a family member had a total hip replacement and is receiving occupational therapy in a short term rehabilitation facility. In OT they are teaching her how to pick up objects that have fallen on the floor. That seems like a reasonable point of intervention to me: it is important that people avoid placing undue stress on a new hip joint and I am sure that the OT does not want her to bend excessively.

Why, though, does my family member have to pick up cones?

I know a little about cones, more from my experience with geometry than from my experience as an occupational therapist. A cone is a three dimensional geometric shape. It is the locus of all line segments between a base and a point outside the plane. I know that the base of a cone can be any shape as long as it connects to an apex at any point outside the plane of the base. As far as I know there is nothing in her home that is cone-shaped. I don’t know if they have ice cream cones right now – I guess that would be an exception. However, the dog would probably eat it long before someone got to it with a long handled reacher. Anyway, I think it is fair to say that nothing that is cone-shaped regularly finds its way onto the floor.

When I think about the things that people do have to bend to pick up, I think that clothes get dropped on the floor all the time. A magazine or the television remote control probably gets dropped. Tupperware and Tupperware lids always seem to fall out of my cupboards onto the floor, but I don’t think that any of those are cones.

So why do occupational therapists have such a fascination with cones? I suppose I should be thankful for small favors that my family member is not stacking cones. We are still waiting for the OT to start teaching her how to get dressed and use the bathroom. How long should I wait before I ask?

Thursday, March 01, 2007

Cultural awareness and occupational therapy

Here is an excellent email question I got from a gentleman in India who is considering a career change and would like to practice OT in an English-speaking country.

My question is: Even if I got good command over English, would indigenous people prefer a foreign therapist and would I be able enough to know their problems?

I had this exact same question when I was completing my fieldwork in a mental health setting in an inner-city environment. I grew up in a suburban mostly middle-class world and when I came into my new worksite I looked around and could not recognize the culture around me.

I understood that poverty existed in the world, but I had not seen people trying to get admitted into the psychiatric unit until the monthly governmental check came.

I understood that some people were on drugs, and I had even seen some of my friends try drugs, but I never saw anyone needing to be strapped down to a gurney after a bad PCP trip because they thought that they could see the devil if they looked closely into people’s eyes.

I heard about people trying to commit suicide, but I never met so many of them who actually tried.

I recall seeing the movie One Flew Over the Cuckoo’s Nest, and imagined that mental health was advancing so much because I saw that electroshock therapy was being conducted on anesthetized patients in an operating room. But it still didn’t fit in with my cultural reality.

My point here is that I had absolutely no basis to understand the sociological morass around me. When I reached for a life preserver I looked for Mary Reilly who had never before failed me – but I found that she spoke about occupational roles and at that time I couldn’t understand how to bridge the divide between the reality of street level mental illness and the need to help people return to normal role behavior where ‘normal’ was nothing that they had ever even approached previously. The model just didn’t seem to fit, and perhaps I was not sophisticated enough at that time to understand.

Since then we have conceptually refined our terminology and we are better able to articulate concepts of occupation and context so that we have models that can help us. I think that Reilly and role theory are still extremely relevant – but perhaps from a broader economic and social perspective that is perhaps beyond the point of this emailer’s question.

Anyway, I think that there are ways to ‘bridge’ these divides – and of course the first step is to be aware of the gap. Once you are aware of the gap you can take active steps to help people in relevant ways. But that is true for all of OT – not just when the gap is represented by language barrier and cultural barrier.

OTs need to have a meta-awareness regarding the interaction between the therapist’s cultural perspective and the cultural perspective of the person receiving services. Without this meta-awareness you will not be able to be maximally effective. It sounds like the emailer is already well on his way to being a good OT.

In the alternative, you can forget about all this cultural meta-awareness diatribe and you can just stack cones, but your patients will leave the encounter unfulfilled and unhelped.